Month: October 2016

Yes it was the day I had to go on the M2, M26. M25 to the Royal Marsden for my 2 month Scan. The weeks go so quickly and seem to get shorter and shorter.

I thought I would be able to put it all to the back of my mind.

My damaged lung would get better. It’s not the case.

I have this worry that it will come back as the Cancer gets clever and finds a way to come back and haunt, me.

I have buried myself in work, In asbestos safety in schools and buildings, worry about rules that are broken etc etc. But my own worries come back and my mind works overtime as the scan looms nearer and nearer.

I miss my friends that have passed, that I can’t talk to anymore. I have many new ones and I love them all but living with the outcome of all this mesothelioma is very hard.

Can you imagine having to live with friend,s being killed in a car accident week after week, its crucifying. Mesothelioma is a car crash. Asbestos is a killer.

This is where my survivor’s guilt comes in. It is a real thing very hard to bear.

We are coming to christmas and that is a time when we lose more, whether that’s because we have so much flu around I don’t know, but after 6 years I have noticed this fact.

Fogive my ramblings but as I have had to point out this week this is my blog, so I can out pour my feelings and thoughts.

I do bury myself in my work and thanks to my Medical team I’m still here to be able to. My neighbour said in tesco’s when I met him tonight, you’re so lucky.

Is it luck? is it fate, or is it that someone has mapped my life out. I would love to know.

Heather Von St James in the US said she dint think cancer sufferers shouldnt be called brave or fighters. I disagreed but really thinking about it maybe that’s a front I put up and inside I’m really a frightened old lady. I will shout out and look so brave, but it’s not really whats going on.

So I have had another scan and had to come away only to go back Wednesday for the result. scanxiety sets in and I have found this advice, Isnt it great that it is acknowledged as real Mesowarriors.

1. Distraction

Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results.

2. Loud Music

Crank up the radio! Blast 80s music! Belt show tunes! It’s hard think about scans while reenacting scenes from Flashdance, and I challenge you to feel anxious while singing “Don’t Stop Believin’.” Trust me, this is some magical stress relief. The science behind it probably has something to do with endorphins, but I am too busy right now rockin’ out to “Pour Some Sugar on Me” to care.

3. Acknowledge It

When scan time is coming near, I feel like I need to wear a sign around my neck warning people that I am not responsible for the words that come out of my mouth. I get short with people and am likely to snap at them for no particular reason. Acknowledging what I am feeling and why can help to make it more manageable for myself and those around me.

4. Make Plans for the Worst Case Scenario

While I always hope to get great news, I find that sometimes I can lessen the panic by knowing what the plan will be if the scans are bad. Cancer makes you feel powerless and at the mercy of the disease. Having a plan in place can give back some of that lost feeling of control.

5. Spend Time with a Child

I’ve written before about the incredible ability that small children have to live in the moment. For them, all that matters is what’s happening right now: this game of Go Fish, these orange slices, this third reading of The Very Hungry Caterpillar. Spend the afternoon with a little one and the worries will drift away for a few hours.

6. Pretend You Already Got Good Results

This is totally delusional, but sometimes I can trick myself into imagining that – hey, I already got the results, and they were great! Sure, it only lasts for a few seconds, but those few seconds are a lovely relief from the anxiety.

7. Know When and How You Will Get Your Results

My oncologist only gives the results in person, so I know I will not hear anything until our appointment on Tuesday. For me, knowing this is a relief (although waiting the weekend is a bit of a challenge!), so I don’t sit by the phone all weekend wondering if I am going to get a call. Discuss with your doctor how you will find out the results so that you don’t have the extra layer of anxiety, wondering when you will hear.

8. Help Someone Else Out

Sometimes, the best way to relieve your own stress is to help out someone else who is struggling. Help a neighbor, talk to a friend in need, shift the focus off of yourself for a while. It can be refreshing to worry about someone else for a change.

9. Meditate

There are many different strategies for calming the mind, such as deep breathing, praying, positive visualization and physical relaxation strategies. And if those don’t work….

10. Medicate

Let’s be frank, depression and anxiety are cancer’s annoying younger siblings who tag along and show up at the most inconvenient times. There is no shame in discussing these issues with your doctor and considering taking medication to help.

So, what about you? What are your best strategies for dealing with the dreaded scanxiety?

Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to Cancerland. Stay tuned for her continued adventures.

Forgive me if we celebrated the wonderful Debate in the House of Lords, by talking about the Mesowarriors Uk, but it was all about them in the House of Lords on Thursday .

We had this Debate– and remember this is my diary and my thoughts, so you might not always agree with me.

We do aknowledge Mesothelioma Warriors World Wide, believe me and we do fight alongside some wonderful people, but what is happening in the UK is so important, as in the end we might find the cure for the disease and our government is backing us.

So many are working together around the world to that wonderful goal.

We do thank the wonderful people who are working tirelessly behind the scenes to make sure we do have the 5 million that the Government have promised for Mesothelioma Research and the Centre of Excellence.

The National Mesothelioma Centre will be a collaboration between four leading institutions who have a major interest in the treatment of mesothelioma: National Heart and Lung Institute (NHLI) at Imperial College; Royal Brompton Hospital; Institute of Cancer Research (ICR); and Royal Marsden Hospital. This collaboration will form the hub of the Centre which will engage with all other hospitals in the UK to which mesothelioma cases are referred and treated.

Professor Sir Anthony Newton Taylor, Head of Research & Development at the National Heart & Lung Institute, who made the application for support from LIBOR fines, is working closely with the British Lung Foundation and other charities in order to ensure that experts from across the lung and cancer research community are able to contribute to this important enterprise.

The £5 million grant, which is intended as seed funding, has been profiled over 4 years and will be paid to the National Mesothelioma Centre, once established. The funding will be subjected to standard Grant Terms and Conditions, including a feedback and reporting mechanism, and audit.

We must make sure it happens and that Mesothelioma does have the money.

Lord Wills, Lord Alton and the others that spoke that night are really behind us as are so many other. IBAS, British Lung Foundation, Mesothelioma UK Asbestos Victims Support Group Forum and many more have really worked hard for Mesowarriors in the UK.

It does feel at last that we have a huge voice and people do listen.

So many people have died with Mesothelioma and the cause has been greed though not banning Asbestos sooner.so it is only right they do look after the victims now and make sure the drugs are found for the treatment we need so badly. We have lost 4 this month in the UK and each death was preventable but worse still I have added, through emails to me and through my blog, and through Patients being recommended to our Face Book Groups, and Twitter over 20 newly diagnosed patients in October.

I don’t like keeping numbers as it reminds us just how bad this disease is.

All the Lords spoke wonderfully about our plight but (please read from the link or see my Blog for 2 days ago ) Baroness Walmsley said it all.

My Lords, I, too, would like to focus on the patients—the 2,500 British people who are expected to die each year of mesothelioma, most of whom have contracted the disease as a result of exposure to asbestos. The use of asbestos in industry and construction, although now banned, was a practice that has had a detrimental effect on many lives, and it is our duty now to offer sufficient aid to those it has affected.

Asbestos lurks in many strange places, including, as we have heard from the noble Lord, Lord Alton, this very building. My husband and I recently demolished an old cottage on our property, and we discovered that there was asbestos in the floor tiles with which my late mother-in-law had been living for 40 years. We had to have them removed by specialists. In the 1970s, when I lived in an old farmhouse, I used an asbestos product to fill the rather irregular holes that I used to drill in the walls to hang pictures and bookshelves, having no idea that there may be a problem with it. Concerns about the dangers of asbestos were first raised early in the 20th century, but its use was not outlawed until 1999. For the thousands of cases now arising 40 or 50 years after first exposure, it is our responsibility to ensure that they are given the compensation and support they require. Unfortunately, the median survival time for pleural mesothelioma, once it has taken hold, is 12 months from diagnosis, but this time, and beyond for the dependents of those affected, must be made as comfortable as possible for those who need help.

Over the years, there have been many shortcomings in the handling of asbestos-related cases across the globe, one such case being the fire at the central ordnance depot in Donnington, Shropshire, in 1983. The blaze which released a huge cloud of asbestos into the air has had a huge repercussion which is still being felt today. Paula Ann Nunn, Ellen Paddock, Susan Maughan, Richard George and Marion Groves are just five local people who contracted mesothelioma and unfortunately passed away as a direct result. Mrs Maughan died only last October. Her daughter told the inquest that it took the local authority five days before they told the community so they were exposed to asbestos for all that time. The ash cloud which spread over an area of 15 square miles attracted many small children who played in it as if it were snow which fell in local gardens for days before people were told it was unsafe. We have heard from the noble Baroness, Lady Finlay, how very harmful that could be to those children. My colleague and noble friend Lady Pinnock has told me about many cases in her area of Kirklees, resulting from working for a brake linings factory, long since closed down.

Mesothelioma is generally resistant to conventional cancer treatment. Long-term survival and cures are extremely difficult, but that does not mean that the mistakes of government and industry alike over the past century should not be paid for by compensation to those affected. The current range of available benefits, both lump sums and long-term allowances, must get to the right people at the right time. The Mesothelioma Act 2014, for which we have to congratulate several noble Lords present today, went a long way to help those who had been unable to access compensation because of the passage of time or a lack of effective record-keeping identifying those responsible. Since 2014, a total of £62.2 million has been awarded. However, of those who were unhappy with the result and requested a review of what they were awarded, 25% had their compensation rate altered—I presume upwards. Given that this illness is still an issue affecting thousands of British people every year and that the nature of mesothelioma’s progress means that time is literally of the essence, it is essential that the correct support is awarded without delay in all cases. Given the significant number of cases reviewed since the launch of the scheme, how do the Government intend to learn from those cases and improve the process so that the right decision is made the first time in as many cases as possible?

Can the Minister also outline the ways in which the Government are promoting the compensation scheme, so that those most in need are fully aware of the support available? Given the vital work done by the charitable organisation, Mesothelioma UK, and its invaluable lung nurse specialists, do the Government intend to follow its lead and introduce more specialist nurses into hospitals to support patients?

Finally, to safeguard against mesothelioma cases slipping under radar given the disease’s lengthy latency, are the Government willing to begin actively seeking out those involved in previous incidents, such as the Donnington fire, so as to promote early identification of their disease and to get immediate support to them?

I will report back when I have been to the House of Lords on 1st November.

In the mean time I have a scan coming up Monday and the results on Wednesday hence my not being able to sleep. We do worry about our scans as it means maybe another free 2 months to enjoy life or going back into treatment. All we pray for and our fingers are crossed for is a stable scan. Mr Nasty must stay laying down in his benign state. PLEASE !!!!

I Found Debbie when I was first in trouble in February 2009 and she helped me through my diagnosis and VATS with advice as she had been through it all.

She had a couple of groups on Face Book and had friends around the world she was helping people to get to Germany to Prof Vogil who had Chemobilization for treatment but it was private and very costly. She was so happy she had found other sufferers.

I joined in and as was having Chemo and trials I built up more Mesowarriors to the group. Jan Debbie and I would spend long evenings talking and working on the Groups and we built them right up. I have carried on building on those groups and adding my own to back my Web Page up. Mesothelioma Onestop and Asbestos Onstop.

Treatments are moving on so we have to keep up with what is going on in the NHS.

This has bought about the Asbestos Industry of Surveyors, Strippers, Manufacturer’s of Equipment, a huge array of business men which I meet up on Linkedin Tweet etc .

They seem to have taken me to their hearts as My Immunotherapy has bought remission. So I devout my life to Mesothelioma and Asbestos.

Mesowarrior groups have built right up and we now have a Committee.

Angela who along with her sister Tracey is the Entertainments and arrange holidays where we all meet up for a weekend away. Blackpool is our next one next June

Karryanne and Stacey are the children’s officers as they have young family and we are finding we have a Third Generation coming along who are wanting to carry on running the groups for many years to come.

Linda Thomas is in Australia now but she helps as well and we all run a support group from our homes on face book and emails.

It has now got official recognition as such and a meeting I attended this week in London my name badge on the table said Mesothelioma Warriors. I could hear Debbie giggling at that.

I do hope she is proud of the way we girls have stayed together and we have kept together and enjoy fun as well as tears and sadness.

There are so many Mesowarriors that have joined her in heaven I bet she has joined them together and has Raves every day. I dont even try to add up how many it is to frightening. We have lost 5 this month that were in our group and we have more that are so ill and I keep finding what is the latest trial and praying they get more treatment.

Kieran Debbies son has grown up so much now into a young man and we all promised Debs we would look out for him so we do, although Angie is the true adopted Auntie and she is always there to advise him. He has of course a loving Father who is really looking after him but it doesn’t hurt to have cyber Aunts does it?

There has been much written in the media recently about the dangers of asbestos, the lack of Government action, and the fact that cases of illness and particularly cancers like lung cancer, colorectal cancer, ovarian cancer, breast cancer and prostate cancer are set to peak between five and ten years from now. Four out of every 10,000 Americans are thought to be infected, but we could not find a figure for the UK.

Mesothelioma is a rare, but aggressive form of lung cancer. Asbestos causes fibres to grow in the tissue of the lungs, greatly restricting their ability to absorb oxygen. The cancer is commonly thought to be a death sentence. One lady, Debbie Brewer, would like you to hear her story. She is very much alive and kicking!

My name is Debbie Brewer and I am 49 years old. I was born in Plymouth in 1959 and am the eldest of 4 daughters.

I have lived in Plymouth all my life and my father was a hard-working man. He had many jobs including being a milkman and working for the local water board but the job that would implode on our family was with the MoD. He gave 3 years of his life to that job and started the time bomb which would destroy him and take him from those he loved the most.

My Mesothelioma story starts in 1994, I was working as a dinner lady at my children’s school and was out in all winds and weathers. I called my GP out one evening as I was in so much pain and after having blood tests done, found I had contracted viral pneumonia.

I continued to have terrible back pain and was struggling to breathe. I couldn’t walk up my stairs to go to the bathroom, I was so frightened that this was the end of my life. I was referred to a chest specialist and was told I had fluid and scarring on the lungs probably due to whooping-cough when I was a child. I was diagnosed with pleurisy and asthma, I thought no more of it and took the painkillers and antibiotics supplied by doctors as it was all I had open to me. The virus left me with terrible pain in my back and struggling to breathe continued.

In 1996 I became pregnant with my third child. I had another bout of the previous problems. I had the same pain, same breathlessness and was hospitalised with a suspected blood clot on the lung. I explained that it was the same thing I had been experiencing since 1994 and stayed in hospital for a week only to be told what I had told the doctors in the first place. There was talk of doing a CT scan. This wasnt done due to me being pregnant. I was 37 years old and knowing what I know now, my baby had saved my life as I probably would have listened to the medical profession and had chemotherapy.

I didn’t bother complaining any more as I had 2 children from my first marriage and my new baby from my second. I was too busy to be in and out of hospital. That was until 2006. My father had been ill for a while, he had pleural plaque which made him struggle for breath and now he had small cell lung cancer. He had worked for the MoD in Plymouth between 1963 and 1966 . His Job was to remove asbestos lagging from the pipes without protective clothing. This wonderful man did this to support his wife and 4 daughters. I watched my beautiful, young at heart father at the age of 69, turn into a frail old man before my eyes.

It was heart breaking. He never knew the problems I was about to face and I am grateful for that as I would hate him to blame himself, none of this was his fault. It was the fault of the greedy management he worked for who failed to tell him the dangers of asbestos and how it was going to impact on his family.

I searched on the internet to find out anything I could about pleural plaque and came across lung cancer, this must be what he has, I thought, Mesothelioma. I looked at the criteria for the disease and was shocked to find I had suffered most of the symptoms since 1994. My father never had Mesothelioma.

I didn’t look into it any further until my dad died in August 2006.

I waited 3 months before I saw my doctor. I asked for a chest x-ray to satisfy myself that I did not have Mesothelioma. How wrong I was, I was called back to see my GP the day after when he dropped the bombshell, I could have Mesothelioma.

I was devastated, I had started to get my life back together, my youngest son is autistic which meant a fight to get him into a school were he was supported. My older children were more independent, I was dealing with Alopecia as well, my hair has been coming out over the last 2 years, and I was starting to get a little of me back. My time was around the corner.

How cruel this was. I waited for 2 weeks before I saw a doctor. I was supposed to have an endoscopy to take a sample from the lung for biopsy. This was declined as the tumour was too far down in the left lung.

I had a VATs (Video Assisted Thoracoscopy) operation on 4th November 2006 which removed 2 litres of fluid and take a biopsy of the tumour. This operation changed my life. The pain and breathlessness had diminished and I felt a lot better. It was a very painful day for my daughter as I have always made a big thing about celebrating the children’s birthdays and the 5th November was hers. Her comment was that it was the worst birthday she had ever had, I had to admit it probably was.

I had tube in my lung for around a week which the district nurse would try to remove fluid with a vacuum bottle. The tube was removed after no fluid was building up and, thankfully, it hasn’t since. I went back to the hospital on 13th November 2006 and was told the devastating news, I had Mesothelioma.

I was heart-broken, I couldn’t leave my babies. Was I never going to see my children move house, get married, have children of their own. My future was gone, I couldnt see anything other than my lovely children having to cope without me and I decided then that I was not going to leave them, there had to be something that I could do to save my life, the NHS wasnt going to let me die, were they?

I saw my first oncologist around a 2 weeks later. There was no urgency in going any further and I was in a multi disciplinary team which is supposed to be a team of experts in the field who would support the patient fully. (I havent had any feed back or contact from that team since leaving the oncologist in 2006). The oncologist was only interested in giving me chemotherapy and leaving me to die. I couldn’t get Alimta with him as he refused me and said I would have to go else where if I wanted it as he would only give me what was available on the NHS even though I had health insurance with my company. He told me I could claim industrial injury benefit, which I knew then I couldnt as I had not worked with asbestos.

He then went on to tell me, while looking at the floor, that I had 6 – 9 months left of my life. I point-blank refused to accept this and decided to look for an oncologist who would be more supportive of how I felt.

The next doctor was great and understood what I wanted. He told me people live for many years with this disease. I had radiotherapy at the site of the operation and decided to name my tumour Theo as I needed to accept it.

Theo was good to me for over a year, no change had occurred, that was until January 2008. Theo was heading for my heart, I already had the cancer in the lymph node from the start. Again I felt let down, I was told by the second oncologist to go home and enjoy myself, how can I enjoy myself for Petes sake, I am going to die!

I was told that younger people than me get cancer and lose their lives, which is terrible I know. He said that they havent had what I have and I should feel grateful for my 48 years. Well I was never grateful for that as I had been poisoned just like my dad. I was determined to live and fight this disease that was trying so hard to take me away from my family and again was not prepared to accept that my life was ending.

I have a website which was designed by my daughter and has been a great support tool for me. A wonderful couple had seen me on This Morning with Fern and Phil and had contacted me as he had Mesothelioma as well. They were trying alternatives and had been to a clinic in Worcestershire, Park Attwood, to have mistletoe therapy. The mistletoe boosts the immune system and makes the cancer cells vulnerable. I made an appointment at the clinic and started the treatment in May 2008.

The couple had also told me about a neuropathic doctor in Harley Street who worked on the blood determining a diet to beat cancer. I went to see him and he told me about a treatment in Frankfurt, Germany that had a Professor who had been having some success with Mesothelioma. That was it, what did I have to lose, I came home and rang the German clinic. I spoke to Professor Thomas Vogl who said he could help me and gave me an appointment for a week later. That was so quick, I got myself sorted and went over.

I was so sure I was going to get the usual knock back and was pleasantly surprised. The Professor was so positive and said he could help me. He said I had to survive as I was now one of his statistics!

I had my first procedure done on 25th May 2008. It is called Chemoembolization and targets the tumour and not the whole system. Each treatment costs 4000euros. I could pay for it as I had a compensation payout from the MoD in Plymouth in 2007 after they had admitted liability.
The procedure is done through the femoral artery in the groin. A catheter is passed through the vein to the tumour in the lung. The chemo is put in and is locked in with an embolizing agent which also cuts off the blood supply to the tumour. After the procedure, I rested for around 5-7 hours before seeing the Professor, he would update me on the procedure and what he saw with the CT scan before I returned to my hotel.

The side effects are being very tired and a little nauseous which lasts about 7 days. I worked full-time all through the treatment as I wanted to keep things as normal as possible for my children.

I returned 4 weeks later for my second treatment and to get the results of the first. I had felt I had a little more lung capacity but put this down to the Professor and his positive attitude working on my psyche.

The Professor told me there had been significant changes, my tumour had shrunk!

It was 10% smaller, I was thrilled. I had 5 further treatments and each one reduced the tumour more. I last returned to Frankfurt in June 2009 for another check up and that showed a yet further 10% reduction; that’s 83% in total since May 2008!!

I feel so well and love the fact that I have got my life back. The Professor has told me that I am his best example yet and is studying me to find out why Theo has responded so well to the treatments. I am now campaigning to get the treatment on trial in the UK as there is so little available to Mesothelioma patients.

I want others to have the hope and joys I have had, I have been in touch with others with Mesothelioma who are having successes also and long may it continue.

Jan Eagerton she only started blogging 2013 but was diagnosed before that. peritoneal can be a longer journey like Jans

Jan had Peritoneal mesothelioma

One of the saddest things about dying from cancer is the realisation that you can see your body deteriorate. At first, especially with mesothelioma, it’s that little breathlessness you never had before. That small incline at the bottom of the road was easy a few months back, now you find you need to stop to take a moment before setting off on to the flat.

In all the years I have been fighting mesothelioma, my one problem was pain, not breathlessness, until last year when I noticed I got breathless walking the dogs, always after walking up an incline.

Just this summer, with a stomach full of fluid I was still marching around. Always a fast walker, on the flat I was walking without a problem, but the stairs, on the other hand, became somewhat tiresome.

Suddenly, after having the drain fitted and taking on a chest infection my breathing plummeted – I can no longer walk five yards without being breathless. Stairs are my enemy, even walking to the kitchen and back takes all my strength. This is full on realisation that makes me worry, ‘Will I always be like this?’ ‘Can the chemo reverse this,’ and lastly, ‘Is my time nearly up?’

There are some solutions to elevate the problems of mobility, such as a wheelchair for going out, a chair lift for those stairs, but mentally this doesn’t remove the fears that our bodies are weakening to the effects of the cancer.

I know bowel cancer, stomach cancer and various others do bring pain, but many are towards the very end. With mesothelioma we seem to suffer from start to finish. I guess that is what makes this the worst cancer in the world to have. Unless some high-powered minister or government official ever had to suffer or watch their family member go through this, they will never see or understand the complexity of what this disease does.

I hate the fact I can see the changes taking place, I can see the pain it brings in my husband’s face, each time I have to ask him to help me. I am losing another piece of my own independence, and I face the fact that I am getting worse.

We are all holding out for that one drug that will help, but since the development of pemetrexed, which works on only 40% of mesothelioma, nothing better has come on the market. That drug was found by accident, maybe the next one is around the corner. But unless a significant amount of people get a benefit from a new drug the trials are scrapped. What happens to the 60% it doesn’t work for?

As I now battle with the spread of my cancer to the abdomen as well as both lungs and back on my pericardium, I fear the worst. I have to believe the chemotherapy I am trying now will take me back to the health I so enjoyed in May and prior. Never again would I complain about that little bit of being out of puff, I would rather that than be in a wheelchair. Never before have I felt like an invalid, but now I need to review my life and begin a new way of normal.

To those facing this same decline we must stay focused on the fact we are still here and still able to share in the life and enjoyment of our loved ones, for it is them we keep pushing ourselves on for. I must put away my own worries about my decline so that my husband can feel he isn’t helpless anymore but helping me live as full a life as normal.

I watched this great debate in the House Of Lords last night and would like to say Thank you to Lord Wills and other members that took part. You talk with such passion and sympathy for Mesowarriors and we are so pleased we have wonderful people like you fighting our corner. A huge thankyou to all that fight our case.

My Lords, I asked for this debate to highlight, again, the urgent need for progress in research into effective treatments for mesothelioma. This is not a new topic for your Lordships’ House, and the fact that we are returning to it again, and that so many of your Lordships signed up for this short debate, indicates its importance.

As your Lordships’ House has heard many times before, mesothelioma is a terrible disease, among the most cruel of all fatal illnesses. It is inflicted too often on those who contracted it through their occupation which exposed them to the asbestos which causes it, and too often through public service, so members of the armed services and teachers as well as factory workers have been disproportionately affected by it. Yet those suffering from it, and their families, were appallingly treated for decades. It took years of struggle to force insurance companies to discharge their obligations to pay compensation, in the end taking legislation by the previous Labour Government—I am delighted to see my noble friend Lord McKenzie on the Front Bench today, as he was the Minister who did so much to make that happen—and the coalition Government to force them to do this.

There have been inexcusable delays in providing adequate resourcing for research into effective treatments for this dreadful illness. More than twice as much is spent on breast cancer research per sufferer, for example, than on mesothelioma. This matters. Although these are projections and, given the long gestation periods for this illness, they could well be underestimates, more than 50,000 people are projected to die in this country alone. There will be many more times that number in the rest of the world. Mesothelioma is a global problem. It affects almost everywhere in the world, including some of the poorest countries in Asia and Africa, countries ill-equipped to develop such research on their own.

However, for all these problems, in the past few months since the last time the House debated the issue, there has been significant progress. The most recent Budget allocated £5 million towards research and the setting up of a national mesothelioma centre. I take this opportunity to thank the Minister who did so much to make that possible and who has always been a stalwart supporter of efforts to improve the situation of those suffering from this disease. There is also now the possibility of matching funds from a charitable donor, thanks in large part to the efforts of my noble friends Lord Giddens and Lord Alton and the British Lung Foundation, and two insurance companies, Aviva and Zurich, have over the past two years, to their credit, donated a combined £1 million to the British Lung Foundation’s mesothelioma research programme. However, all this is only a start. It has been estimated that a national centre for mesothelioma research, on a hub-and-spoke model, will need set-up costs of £15 million to £20 million and projected running costs of £3 million to £5 million annually. So much could be done with this funding. Medical science has made extraordinary progress in the past decades. Once-dread diseases have become manageable through the efforts of brilliant and dedicated researchers, and the combination of developments in genomic science and the dazzling new power to process data digitally promises so much more.

We have the infrastructure in the form of the MesobanK, a biobank unique in Europe and one of only two worldwide, which collects tissue, blood samples and clinical data from mesothelioma patients to help accelerate research across the UK and internationally. Sequencing technology is being used to observe gene mutations in mesothelioma which will support the development of future therapies. Advances are being made in immunotherapy and radiotherapy. Other developments in genetic research could produce advances in treatment if sufficient funding is found to run appropriate clinical trials. So where is the extra money going to come from to build on these developments and make further progress possible?

The Government obviously have it in their power to provide it by increasing the sums of money available for research, and the arguments for doing so are compelling. I shall run through them briefly. Apart from the alleviation of terrible suffering in patients, it would save taxpayers money. Of course, there is no guarantee that any research will produce results, but the experience of research into other cancers suggests that a combination of money and time will produce significant advances in treatment, saving taxpayers some of the huge sums involved in treating mesothelioma sufferers, currently upwards of £75,000 per patient, with total annual costs exceeding £185 million. By 2050, the total is likely to rise above £5 billion. Investing in mesothelioma research can only help to build on our world lead in biomedical research.

Even in these difficult times, £3 million a year would more than treble the amount currently spent and fund a national centre to co-ordinate and develop research. Perhaps a little of all those savings that leading figures in the Government promised us would result from leaving the EU could be made available for research into this terrible disease. I suspect that this will not be the last time the Minister hears that particular argument in the months ahead.

If not from government, where else might funding come from? The insurance industry has historically been implicated in the way mesothelioma sufferers and their families have been failed over generations, but the Mesothelioma Act 2014 offers an opportunity to start a new chapter in that relationship, building on the good examples set by Aviva and Zurich. Surely, the time has come for others in the industry to stand beside them in providing the relatively small sums, in terms of their turnover and profits, to fund research. After all, the more effective treatments can be found, the less they will need to pay out in the long run.

Perhaps the time has come also to look to another business sector that has been heavily involved in these issues over the years. Law firms have received huge sums in fee income from mesothelioma claims over the years. Of course, much of this has been justified, as they fought for justice for sufferers, and no one should ever want to see the victims of this disease denied appropriate legal representation. However, the Mesothelioma Act has streamlined the process for compensation, so perhaps the time has come to look at those fees, with a view either to fixing them, and thereby releasing more funds that could be made available for research, or for the legal industry to step up beside insurers to ensure that research is adequately funded.

Progress is waiting to be made, and there are ways of making it quickly and relatively painlessly, but, if none of these things happen, this campaign will still continue. As we have seen over and over again over the past 10 years, neither your Lordships’ House nor the other place will accept the status quo. I hope that there is action that the Government can and will take, and I hope that the Minister will indicate today that they will at least be prepared to explore one or more of the ways that I have suggested to ensure that the funds so desperately needed for research into this cruel disease will be made available, and soon.

My Lords, I start by thanking the noble Lord, Lord Wills, for introducing this very important topic. Unfortunately, at the beginning of this year, someone I know extremely well was diagnosed with mesothelioma. She is a middle-aged woman who does not have any connection to the building industry and has not lived or worked in a building under renovation—and nor has any of her family. As noble Lords can imagine, therefore, it was an incredible shock. Over this year, I have become quite familiar with the disease and its treatments, so this afternoon I am speaking from the point of view of the patient.

What has really struck me is the stark contrast in the drugs you receive if you treated under the NHS and those you can receive if you are being treated under private healthcare and are wealthy enough to be able to afford the best possible treatment available. Those treatments can extend life expectancy, which on diagnosis if you undergo all the chemotherapy, is on average about 18 months. The NHS provides the chemotherapy and does an absolutely wonderful job. An operation can be undertaken, although it is a very complex one, to remove the multiple tumours associated with mesothelioma. It can involve removing the diaphragm, the pleura around the lungs and the membrane around the heart. Skilled surgeons are required to undertake the operation and some healthcare companies provide cover for it, although the NHS will not. The cover that most healthcare providers offer does not necessarily meet the full costs of the surgeons, who have to be very highly skilled. Undertaking the operation means that you can double the life expectancy of an individual.

At the end of chemotherapy, what are the options? You can continue with a drug called Avastin, which is licensed for breast cancer but not for mesothelioma. It can be taken in conjunction with the rest of the chemotherapy. It costs £5,000 a pop. Some health insurance companies and providers will cover it, but the NHS will not. You take it once every three weeks, so more than £86,000 a year is required to cover the cost. Some patients have been on it for more than two years without recurrence. Its success varies as people vary, but there have been some great successes.

If—or unfortunately more like when—the mesothelioma returns, what are the options? You can try the chemo again, although sadly it is not always effective. The NHS will provide that chemo. What health insurance companies and the NHS do not cover is access to the latest drugs. The one that is most recommended costs a quarter of a million pounds—it is a one-off treatment and it has to be funded. Under the NHS you have access to UK trials, but because this disease is incredibly rare and has multiple sub-types, the trial you would be best suited to is not necessarily taking place in the UK, so if you want to get on a trial you have to fund your own transport and accommodation costs, possibly for several months while you undergo the trial. Life expectancy can and has been proven to be extended in people who have been fortunate enough to be able to afford this.

As the noble Lord, Lord Wills, mentioned earlier, there are many civil suits as people are able to identify the source of asbestos that triggered their mesothelioma. However, a group of people are unable to identify the source and are totally reliant on the Government’s compensation scheme, which goes nowhere near covering the costs that will prolong their lives. I therefore ask the Government to please look at the compensation scheme to see whether the payments can be upped so that everybody, regardless of their own wealth, can have access to these drugs. It involves a relatively small number of people because only about 2,500 a year are diagnosed with mesothelioma, and only a percentage will not have a civil action. It therefore should not cost the Government that much. It seems only right and fair to make sure that everybody has the opportunity to prolong their life as far as possible.

My Lords, I am most grateful to the noble Lord, Lord Wills, for securing this important debate, and the noble Baroness, Lady Couttie, for outlining the clinical scenarios that people face, often when they are young, as they suddenly realise that they have this devastating disease. More than 2,500 cases are diagnosed each year.

I will focus initially on the iceberg effect; we are seeing just the tip because of asbestos in schools and the worry about that. Some 94% of cases of mesothelioma are effectively preventable because they are associated with chronic exposure to asbestos in one way or another, and we know that three-quarters of our schools have asbestos in place. The number of teachers dying of mesothelioma has been going up from around three a year in the early 1980s to 22 in 2012 alone. That is a marker of developing mesothelioma following chronic exposure.

The Committee on Carcinogenicity of Chemicals in Food, Consumer Products and the Environment has pointed out that we do not know whether children are intrinsically more susceptible to developing mesothelioma following asbestos exposure. However, it seems that the lifetime risk if they are exposed at the age of five is about five times that of someone aged 30 who is exposed to the same amount of asbestos. Therefore it seems that exposing children is storing up problems for the future.

I would like to coin the term “pre-mesothelioma” for the number of people in the population who will probably go on to develop mesothelioma but have no idea about it at all. If we are undertaking research, we have to get to earlier diagnosis, so we have to find ways much earlier on of picking up the markers of transformation to malignancy in the areas where asbestos fibres are stored. At the moment we do not know of any actionable drivers of the disease in order to pick up and identify early markers. There are multicentre trials, as the noble Baroness has just outlined, but the problem is that they are very disparate. That is why there is a desperate need for a single centre in the UK to co-ordinate them. That reminds me of when I was a very junior doctor and the MRC co-ordinated trials into the leukaemias, and it was from those that some advances were made. There needs to be a driver with just about everybody being recruited into a trial if that is at all possible. Currently, patients have to find out about trials and they do not really know where to go. They want to contribute because they do not want the same thing to happen to other people. The other problem is that of course while the MesobanK is in place and the cell lines are coming along, they are not there yet. We need to identify how tumour surface antigens are expressed and detect better markers of early disease.

I remind noble Lords that 60% of patients diagnosed with mesothelioma are dead within a year; in other words, they are palliative care patients. I am afraid that some clinical commissioning groups are not commissioning specialist palliative care services adequately, not at a level that allows them to be integrated with cancer and chest disease services. That is essential to provide psychosocial support as well as support for the rest of the family, and to deal with the devastating symptoms of the disease. Those groups of specialists also want to research some of the effects of the disease when it is not curable.

Lastly, we need data. I declare an interest as chairman of the National Council for Palliative Care. I was very concerned to discover that Public Health England does not plan to carry on collecting a minimum dataset from specialist palliative care services. Without that data we will not know whether what we are doing is improving services for patients. It would cost only £200,000 to refresh the collection and data management process, which in the greater order of things is nothing. Without good data on the number of patients, the people who transform from what I would call pre-mesothelioma into mesothelioma, and the numbers that need palliative care services, we will have no idea whether we are improving.

My Lords, I had always associated mesothelioma with the construction trade. It came as a complete shock that a dear friend—Sylvia, a retired maths teacher, an energetic walker and a very active grandmother—should be diagnosed with the disease. It may well have been contracted 50 years ago when she worked as a teacher in west Africa. It was even more of a shock to discover that it was a death sentence. Sylvia died a troubled and dreadful death five months later. As her husband Geoff said, “This cancer doesn’t allow for peace. There are more sorts of pain than those that can be, and were, dulled by opiates”.

What shocked me almost as much was the struggle of medical researchers to raise money to find improved treatments for the disease. The British Lung Foundation —BLF—and Mesothelioma UK have campaigned tirelessly for more research but with only limited success. Do funders regard it as a marginal cancer? Perhaps they think it will be reduced over time because products containing asbestos were banned in the UK in 1999. How have we become so complacent? Some 2,500 people in the UK are predicted to die each year of mesothelioma. The incidence is increasing, as has been mentioned, for example among schoolteachers. How have we become so blind to the immense suffering of those who contract the disease and of the families who care for them? Although we can hope that the rate will eventually decrease, no such hope is available in developing countries where asbestos continues to be used and where committed people just like my friend Sylvia will continue to work, as will countless members of the local populations.

Research is key yet the BLF’s figures show that funding is absolutely parlous compared with other cancers that kill a similar number, and even the published figures are thought to be an overestimate. I talked to the NIHR Biomedical Research Centre at UCL—I declare an interest as a member of council at UCL. UCL, along with Leicester and Barts, is doing innovative and exciting work with a small amount of funding into genomic damage which might lead to targeted new treatments. Other centres are similarly innovative. How much more could be done if they were better funded?

Companies such as Hugh James, Simpson Millar and Shield Environmental Services have donated. Insurers have helped in the past. Two which have already been mentioned, Aviva and Zurich, have increased their contribution to £1 million over two years, but the final grant is this year. The £5 million grant from the Government this year for a national centre for research is indeed welcome. I hope it will enable increased collaboration with other centres, but it will take £5 million each year to put mesothelioma on a par with other cancers, such as skin cancers, that have the same mortality levels.

A more sustainable model is required. Where is the rest of the insurance industry? Insurers are likely to pay out £11 billion in compensation to people who were exposed to asbestos in the workplace. If only a tiny fraction of this were donated to research, it would be transformational. Saving lives by donating to research could potentially save insurers millions. Will the Minister commit to some strong arm-twisting to persuade the industry to make this a comprehensive and permanent commitment, if necessary on a statutory basis?

I want to make a final point about the carers of those affected. My friend’s husband Geoff said, “Sylvia’s progress wasn’t predictable, no routine could be established, every day involved new challenges”. He was part-retired and had a pension. Supported by the GP and the district nurse, he was able to provide the care that enabled Sylvia to live and die at home as she wanted, where her dignity was preserved in a way she felt it could not have been even in the kindest institution. If he had been on a limited income and had to go out to work, how would that have been managed? Will the Minister tell us what the Government are doing to make that kind of caring an option for anyone suffering a terminal illness of this kind?

My Lords, I am delighted to be able to support the noble Lord, Lord Wills. It gives me the chance to say how much I have appreciated working with him, the noble Lord, Lord Giddens, and other noble Lords in trying to push this issue up the list of political priorities. An indication that the message is bearing fruit was contained in the former Chancellor’s Budget announcement on 16 March that £5 million would be approved for a national mesothelioma centre, which I greatly welcome.

This is also a chance to say that after the Second Reading of my Private Member’s Bill on mesothelioma research the Minister has been unstinting in his efforts to draw together the medical and scientific community, the insurance industry and diverse political interests. It is good to be able to put on record my appreciation of his commitment and engagement. That Private Member’s Bill emerged from a narrowly defeated amendment in your Lordships’ House that would have required the more than 120 insurance companies to contribute to mesothelioma research. The former Minister told the House that he was confident that the four insurance companies that were then voluntarily supporting research would be joined by others. The sad reality, as we have heard, is that the four fell to two, Aviva and Zurich.

As the noble Baroness, Lady Warwick, just told us, insurance companies that represent employers whose employees were exposed to fatal asbestos must recognise their moral obligation, but it is also in their own self-interest to help find the causes of and cures for mesothelioma—a public health disaster that should never have happened. I recently heard from a patient support group that is concerned by media reports that Companies House proposes to destroy defunct company files after a period of five years. Perhaps the Minister will either say a word about this or agree to write to me.

The admirable British Lung Foundation says that we are now at a point in mesothelioma research where we can see real potential. For example, Dr Sarah Martin at Barts Cancer Institute has found that 50% of mesotheliomas lose the enzyme ASS1, which makes the amino acid arginine. As these mesotheliomas depend on a steady supply of arginine from the bloodstream and other cells to grow, Dr Martin is exploring the potential of using existing drugs to block the flow of arginine to these cells, in turn starving them.

Resourcing this and innovatory adult stem cell work, which the noble Lord, Lord Giddens, and I heard about more than two years ago and which we were told would require £2.5 million to bring to clinical trials, is imperative in a country that has the highest recorded incidence of mesothelioma in the world, with 40,000 recorded deaths already, and, as we have heard, a further 2,500 deaths annually. One in five work-related deaths are attributed to mesothelioma. What is the Government’s current estimate of the cumulative number of British people who will die of mesothelioma over the next 30 years? Perhaps we can also be told how many of the 3,000 cancer nurse specialists specialise in mesothelioma care.

With tens of thousands destined to succumb to this fatal disease, it greatly disturbs me that we have no national programme, plan or timetable for the removal of asbestos from our environment, although, by contrast, we have devised one for the Palace of Westminster. Significant quantities of asbestos remain in our homes, workplaces and public buildings, not least in the schools referred to by my noble friend Lady Finlay, and there is a growing incidence of mesothelioma among schoolteachers. As my noble friend said, we should carefully consider the effects on children.

When the Minister replies, I hope that he will refer to the need for a national strategy and to what he might be able to do to draw cross-departmental Ministers together to consider what it should consist of. I hope too that he will look at properly resourced research in the way that the noble Lord, Lord Wills, described, as well as at an examination within his own department of the significant variations in the levels of care, treatment and support, which have been referred to during this short debate.

My Lords, mesothelioma, if I may put it in this way, has a past and a future. The past has seen a long struggle to get the origins of the disease recognised and then to achieve adequate compensation for those suffering from it. That struggle is well documented in the book by Geoffrey Tweedale, Magic Mineral to Killer Dust. Asbestos was originally a magic mineral. He shows in detail just how much industry resistance there was to accepting the link between asbestos and mesothelioma.

I wish to pay tribute to MPs and noble Lords. If your Lordships will forgive me, I should like to single out—it is like a little boys’ club—the noble Lords, Lord Alton and Lord Wills, with whom I have worked closely, but many have been involved in pressing for proper recognition of the disease and for increased compensation for sufferers. That struggle, of course, continues. The British Lung Foundation has been mentioned, and a range of other, more local groups have had a significant impact. It is good news that former members of the armed services who have contracted mesothelioma will henceforth be entitled to significant compensation. However, on the issues of adequate compensation and giving the disease a higher profile in the public consciousness, plainly a lot more needs to be done. I am afraid that Action Mesothelioma Day, designated as Friday 1 July this year, received only scant coverage in the press.

When I say that mesothelioma has a past but also a future, I mean that it is time to stop it being seen as simply a legacy disease—a hangover from a time when asbestos was widely used. I believe—and I hope that people who work more directly in medicine than me will agree—that we are entering a period of potential breakthroughs on the frontiers of medical research, especially as concerns the diverse forms of cancer. The awesome algorithmic power of supercomputers is making possible advances in genetics that could not have been achieved before. A good example—perhaps the most well known—is the supercomputer Watson, which won the amazing game of “Jeopardy!” on American television. It is an ordinary-language, everyday knowledge game. At one point, no one thought that it would possible for a computer to win it, as it depends on so much everyday knowledge. In terms of being applied to cancer research, as is now the case, Watson and other supercomputers have massive capacities compared with any human researcher. They may not have the same innovative capacities, but their algorithmic powers are extraordinary. Watson can sift through literally millions of scientific papers and use data-mining to suggest hypotheses to be subject to further tests. One should also mention the supercomputer Beagle at the University of Chicago, which is being used to radically accelerate genome analysis.

For the first time ever—perhaps because of the digital revolution, which is one of the things we are talking about—there is a truly global community of scientists working at the cutting edge of medical issues once thought to be intractable. As a result of such ongoing research, we now know that mesothelioma shares certain components, on a genetic level, with other types of cancer. Cancers are in general now increasingly identified genetically rather than described on a more macro level. This means that research into the nature of mesothelioma is of broader significance than was once thought to be the case, and that advancing knowledge about other forms of cancer can in turn be brought to bear on mesothelioma. For these reasons, like other noble Lords, I very much welcome the £5 million towards establishing a research centre, which the noble Lord, Lord Prior, has played such an important part in. As the noble Lord knows, I would like us to raise further sums, which I believe one can do once this funding exists. I would like the centre to have a global orientation linked to, for example, the Pacific Mesothelioma Center in Los Angeles. We should drive research onwards to look not just for improved treatments but for something that is perhaps no longer completely impossible: some kind of cure.

My Lords, I thank the noble Lord, Lord Wills, for securing this debate and giving us an opportunity to discuss this subject once again.

I shall focus my remarks today on how we might improve mesothelioma surgery in the NHS. It is a subject that rarely gets discussed, but one that deserves much more attention than it gets at present. I was delighted that the noble Baroness, Lady Couttie, was able today to highlight some of the options available.

When my sister Annabel was diagnosed with mesothelioma a couple of years ago, one of the treatments available to her was radical surgery. This meant removing her pleura, the lining surrounding each of her lungs. Finding a surgeon with the right experience was not a straightforward process and relied entirely upon a Rolodex network of surgeons that her oncologist had built up over many years, often scattered around the country. Eventually, she found someone to evaluate her, but it took a long time to arrange and the procedure proposed was very risky, which was due in part to the fact that her tumour had grown so rapidly since her original diagnosis. On top of that, the surgeon, although very experienced, had not performed the procedure very often and lacked the familiarity of approach that specialisation usually provides. Given its radical nature and the need for complete tumour removal, should not surgical resection be concentrated at one centre of excellence, where patients can receive immediate attention, new techniques can be researched and surgeons can benefit from training and others’ experience? I am sure that patients will be willing to travel as far as needed to be in the hands of super-specialists.

Given the highly specialised procedure of removing pleura, what research is currently being carried out on resection methods? How does the NHS plan to optimise its approach to such surgery? Does it, for example, appear in the National Institutes of Health research plan? If not, why not? Again, there is huge scope for improvement here.

With regard to new drugs, what research is currently taking place on the impact of preoperative non-steroidal anti-inflammatory agents, given their success in other forms of cancer surgery? This should be another research priority for the NIHR, especially given the chronic inflammation component of mesothelioma. The synergies are such that we ought to be applying the benefits of such cancer research wherever possible. This is a cheap intervention, given that the drugs are generic.

All these issues point to the need for a specialist surgical registry and surgical outcome transparency in mesothelioma. Even transparency on the basics of annual volume and 30-day mortality by surgeon, centre and surgical approach would allow the supervising oncologists to find experienced surgeons in a timely manner. It will also allow for continuous surgical method improvement and best-practice dissemination. This holds true not only in mesothelioma but in less common and rare cancers requiring radical high-risk surgery. These cancer surgical registries should be a priority for the NIHR and NHS England. We need clarity about which body is responsible for their funding, given that they span both quality control and research. I hope that the Minister will encourage the bodies responsible to outline how they plan to drive and develop surgical registries and associated research in these cancers.

My Lords, I, too, would like to focus on the patients—the 2,500 British people who are expected to die each year of mesothelioma, most of whom have contracted the disease as a result of exposure to asbestos. The use of asbestos in industry and construction, although now banned, was a practice that has had a detrimental effect on many lives, and it is our duty now to offer sufficient aid to those it has affected.

Asbestos lurks in many strange places, including, as we have heard from the noble Lord, Lord Alton, this very building. My husband and I recently demolished an old cottage on our property, and we discovered that there was asbestos in the floor tiles with which my late mother-in-law had been living for 40 years. We had to have them removed by specialists. In the 1970s, when I lived in an old farmhouse, I used an asbestos product to fill the rather irregular holes that I used to drill in the walls to hang pictures and bookshelves, having no idea that there may be a problem with it. Concerns about the dangers of asbestos were first raised early in the 20th century, but its use was not outlawed until 1999. For the thousands of cases now arising 40 or 50 years after first exposure, it is our responsibility to ensure that they are given the compensation and support they require. Unfortunately, the median survival time for pleural mesothelioma, once it has taken hold, is 12 months from diagnosis, but this time, and beyond for the dependents of those affected, must be made as comfortable as possible for those who need help.

Over the years, there have been many shortcomings in the handling of asbestos-related cases across the globe, one such case being the fire at the central ordnance depot in Donnington, Shropshire, in 1983. The blaze which released a huge cloud of asbestos into the air has had a huge repercussion which is still being felt today. Paula Ann Nunn, Ellen Paddock, Susan Maughan, Richard George and Marion Groves are just five local people who contracted mesothelioma and unfortunately passed away as a direct result. Mrs Maughan died only last October. Her daughter told the inquest that it took the local authority five days before they told the community so they were exposed to asbestos for all that time. The ash cloud which spread over an area of 15 square miles attracted many small children who played in it as if it were snow which fell in local gardens for days before people were told it was unsafe. We have heard from the noble Baroness, Lady Finlay, how very harmful that could be to those children. My colleague and noble friend Lady Pinnock has told me about many cases in her area of Kirklees, resulting from working for a brake linings factory, long since closed down.

Mesothelioma is generally resistant to conventional cancer treatment. Long-term survival and cures are extremely difficult, but that does not mean that the mistakes of government and industry alike over the past century should not be paid for by compensation to those affected. The current range of available benefits, both lump sums and long-term allowances, must get to the right people at the right time. The Mesothelioma Act 2014, for which we have to congratulate several noble Lords present today, went a long way to help those who had been unable to access compensation because of the passage of time or a lack of effective record-keeping identifying those responsible. Since 2014, a total of £62.2 million has been awarded. However, of those who were unhappy with the result and requested a review of what they were awarded, 25% had their compensation rate altered—I presume upwards. Given that this illness is still an issue affecting thousands of British people every year and that the nature of mesothelioma’s progress means that time is literally of the essence, it is essential that the correct support is awarded without delay in all cases. Given the significant number of cases reviewed since the launch of the scheme, how do the Government intend to learn from those cases and improve the process so that the right decision is made the first time in as many cases as possible?

Can the Minister also outline the ways in which the Government are promoting the compensation scheme, so that those most in need are fully aware of the support available? Given the vital work done by the charitable organisation, Mesothelioma UK, and its invaluable lung nurse specialists, do the Government intend to follow its lead and introduce more specialist nurses into hospitals to support patients?

Finally, to safeguard against mesothelioma cases slipping under radar given the disease’s lengthy latency, are the Government willing to begin actively seeking out those involved in previous incidents, such as the Donnington fire, so as to promote early identification of their disease and to get immediate support to them?

My Lords, this has been a brief but exceptionally well-informed debate. We have heard from noble Lords whose understanding of mesothelioma has been driven by a family experience, a colleague’s experience or a friend’s experience. We have also heard from the medical fraternity and its expertise. I thank my noble friend Lord Wills for initiating this debate and acknowledge the work which he, together with the noble Lords, Lord Alton and Lord Giddens, and others, have done since our last debate on this topic a year ago. We should remember, as have others, the tireless efforts of Lord Avebury, who campaigned persistently for the sufferers of mesothelioma.

Obtaining justice for sufferers of mesothelioma has been a long and tortuous journey. I think that it is fair to say that, until recent times, efforts have been concentrated on seeking to ensure that sufferers and their families have received material support—money—to help them cope with the traumatic effects of this invariably fatal and excruciatingly painful condition. This journey has encompassed access to the industrial injuries disablement benefit; the 1979 compensation Act for work-related mesothelioma where the employer no longer exists or their liability policy cannot be traced; efforts to improve retracement policies; the 2008 diffuse mesothelioma scheme, where there is no nexus; and then the diffuse mesothelioma payment scheme, which is funded by insurance companies. Each of these in its own way has made access to support more secure, however inadequate. We have praised before the work of the noble Lord, Lord Freud, in delivering the 2014 payment scheme and condemned the historic reluctance of insurers to meet their moral obligations. We note that the payment scheme was able to raise payment levels to 100% of average civil claims in 2015. Perhaps the Minister can confirm that this has been maintained. It is understood that it is driven by the benefits of better tracing of employer liability insurance policies. Again, perhaps the Minister could confirm that.

Last year, the Minister acknowledged that it was wrong to look at mesothelioma as a legacy issue. The projections are that it may have peaked, but it will be with us for a very long time. Moreover, the causes of mesothelioma—exposure to asbestos—are still too prevalent in our environment, especially, as we have heard today, in schools. We may be more aware about how it should be managed—the HSE gives advice on it—but we know that practice is not always followed and people will cut corners. The noble Baroness, Lady Finlay, spoke about the effects of this on children. Seeking a cure remains the imperative. When we discussed the Bill of the noble Lord, Lord Alton, there was some disagreement about precisely how much research had been undertaken previously—how much might be generic and how much was specifically focused. The Minister argued that the problem was not lack of funding but a lack of quality research proposals—I think that this was the position asserted by the noble Earl, Lord Howe, in the previous debate on that Bill. Can the Minister now bring some clarity to this issue? What has been the outcome of the strategy to stimulate more research projects?

The Government should be congratulated on their allocation of £5 million of LIBOR fines to establish a national mesothelioma centre. The announcement, of course, made specific reference to service veterans, but this centre is to be a collaboration, it is understood, between four leading institutions which will form a hub—I presume that it will be a virtual hub. It would be good to hear from the Minister, as a practical matter, how the funding of this is to be organised and how it is to go about undertaking and supporting research. It is to be welcomed, but this is still not on equal footing with the rest of cancer research. Nevertheless, “progress is waiting to be made” was the expression, but not without continuing pressure from a range of noble Lords and Members of the other place, those noble Lords who have participated in this debate and, of course, the continuing suffering of those who endure this terrible condition.

My Lords, this has been another really excellent debate on this subject. I join others in thanking the noble Lord, Lord Wills, for raising it again—it is really important to keep it in the public eye. I thank the noble Lords, Lord Giddens and Lord Alton, for collaring me on this subject many times over the last year. It is one of the privileges of being in this House that one is able to take an interest in these issues and try to do something about them—otherwise, what the point of being here? The point is to make a difference. What this has demonstrated is that if there is persistence—real, dogged persistence, often in the face of all kinds of tribulations—you can make progress. It has been a long and tortuous journey, as the noble Lord, Lord McKenzie, said, but there are signs of progress.

I shall pick up a few points before I get into my speech. First, I cannot answer the point of the noble Baroness, Lady Couttie, in detail today, but the level of compensation is certainly something I shall look at in view of her comments about the cost of these new drugs. This is probably an issue more for NICE and NHS England than the compensation scheme. The noble Baroness, Lady Walmsley, asked whether we are learning from the reviews of these cases, in view of the importance of time. I will certainly look at both those issues. They are, in a sense, related to the remarks of the noble Lord, Lord Freyberg, about the huge benefits of specialisation. I have the guidance from NHS England on the treatment of mesothelioma here. I shall not read it out today, because there is not time, but the noble Lord’s point about having a centre of excellence and looking at the improved outcomes from people doing these things repetitively, many times, rather than spreading very complex surgery over many different sites, is absolutely true. Having proper data in registries which can be made transparent is also a hugely important driver of change.

The noble Lord, Lord Giddens, and the noble Baroness, Lady Finlay, raised the issue of data. Data are hugely important. In a way, if one looks at all the advances that are coming along in cell therapy, gene therapy and the like, in health analytics and big data, the artificial intelligence and machine learning that come from these offer huge potential for improving healthcare in this country. I should also mention that it is clear that many people here have been touched, directly or indirectly, by this devastating disease. That adds not just poignancy but urgency to our discussions. It is interesting how often a patient’s story can bring data to life—data on their own are not enough. It is when you hear about individuals who have suffered and whose lives have been changed or who, indeed, have died, that it is brought home to all of us just how important it is.

We expect the rates of mesothelioma to increase in coming years, due to high exposure to asbestos in the 1960s and 1970s. The noble Baroness, Lady Finlay, raised the issue of schools. It is the responsibility of the Health and Safety Executive, as she will know. The advice is often to leave it where it is and not disturb it—it is not dangerous to children if it is left dormant. If anyone has any evidence that the HSE is not doing the rounds or that there are local authorities in the country where schools are in need of repair, they should bring it to my attention and I will ensure that the HSE follows that up.

Rates of mesothelioma have increased by nearly five times in Great Britain since the late 1970s. In 2014, there were 2,343 registrations of mesothelioma in England: 1,954 men and 389 women. The incidence is expected to peak in the 2020s but, as has been mentioned, it will remain a significant health problem into the 2050s. It is not a legacy disease. It is going to kill many people over the next 30 or 40 years. In 2014, 2,236 deaths were caused by mesothelioma in England, and the latest survival figures suggest that 46% of men survive for one year, compared with 51% for women. Five-year survival is much worse: only 5% for men and 11% for women. It is a death sentence—there is no getting away from that. Others have mentioned that this is a worldwide issue. One research group estimates that, on average, 14,200 cases are diagnosed worldwide every year, and that will be going up, not down.

On the research aspect, there is some better news. On 16 March, the Chancellor announced an award of £5 million to establish a national centre for mesothelioma research. A number of noble Lords have said how important it is that this is co-ordinated—that various universities and research centres around the country do not all have a crack at it, but there should be a national centre for research. This announcement was in response to an application from Imperial College to urgently address the anticipated imminent high mortality rate among Royal Navy veterans and dockyard workers. The award is one of a series funded by the LIBOR fines that have been made since October 2012.

It is envisaged that the national centre will be a collaboration between four leading institutions which have a major interest in the treatment of mesothelioma: the National Heart and Lung Institute at Imperial College, the Royal Brompton Hospital, the Institute of Cancer Research and the Royal Marsden Hospital. It is pretty impressive standing here naming four institutions that are absolutely world class. This is an extraordinary country when it comes to research. The Marsden, the Brompton and all these institutions are fantastic. They bring together expertise in the genetics of cancer susceptibility and in targets for treatment. Of course, the work being done in genomics will have a huge impact on this in years to come—not quite yet but soon, I hope.

The Department of Health has been in discussion with the British Lung Foundation to work together to bring about the establishment of the research network. The plans are not yet finalised, but the aim, which the department supports, is to attract further donations, to be channelled by the British Lung Foundation so that it can continue its role as the body through which voluntary donations for mesothelioma research are being channelled competitively to the best science centres across the UK. As the organisation which currently administers mesothelioma research grants funded from insurance industry donations, the BLF is well placed to do this. I add my thanks to Aviva and Zurich, the only two insurance companies which have lived up, I think, to a very important moral obligation. We should not give up in our talks with the insurance industry to persuade it. It owes a moral duty but, as pointed out by the noble Lord, Lord Alton, it is not just a moral duty; there is also some enlightened self-interest in this. Maybe the lawyers would like to chip in as well; that would be good.

We understand that on 1 November—next week—the BLF, alongside the Association of British Insurers, will be hosting a seminar in this House on the future of mesothelioma research. The seminar will focus on the previous research which the insurance industry has funded across the UK, how it can be built on, and how to ensure that mesothelioma projects across the country tie into the work of the new national centre. Together, the MRC and the NIHR spend more than £1 billion annually. In 2015-16, they spent more than £3 million on mesothelioma research. I will be sending a copy of this debate to Sally Davies, the Chief Medical Officer, and Chris Whitty, the Chief Scientific Adviser, to ensure that they pick up all the important arguments that have been made today.

Last month the Government announced £816 million over the next five years for the biomedical research centres across the UK. These centres host the development of ground-breaking new treatments, diagnostics, prevention, and care for patients in a wide range of diseases. Around £118 million of the funding will be for cancer research and we would expect some of that to support mesothelioma research. The fact that we have this £5 million ought to attract more money from the more conventional cancer research programmes.

In March 2016 the National Cancer Research Institute co-ordinated a meeting with the British Lung Foundation, the MRC, Cancer Research UK and the Department of Health to discuss research opportunities in mesothelioma. This was followed up with a community workshop at the International Mesothelioma Interest Group meeting in Birmingham in May this year and has led to the formulation of a draft research priorities document. This will be further developed at a second workshop currently scheduled to take place in February 2017.

There is room for hope that some progress is being made here. We have to keep the momentum going and the profile high. I think we all accept that some cancers seem to have caught the public imagination to a greater extent than this one, which in a sense puts a greater obligation on us to keep it in the public eye. I have been delighted to do what I can and will continue to do so. Again, I thank all noble Lords for continuing to raise this very important topic.

Monday saw us meeting up with Liz Darlinson and her team and Laurie of IBAS and others. I hadn’t realized that I was there for my connections to Mesothelioma Warriors it is wonderful to see our work on Face Book is being seen as a Support Group and my Website http://onestopmesothelioma.co.uk/index.html Is really being used. I wish I saw my worth and how people are listening to me. I will grow on this and we will update our website more often.

It was a great meeting and I hope there will be more of them as we need to come together and work together in the UK and maybe we will get things together and passed.

I did meet a great mesowarrior who is working so hard since her Father died of Mesothelioma. She has a strong voice.

Recently, Julie Roberts got in touch with Mesothelioma UK to tell us about her campaign to raise awareness of mesothelioma in Scotland.

Julie is so passionate about this because her life was changed forever when her dad, Gordon, was diagnosed with mesothelioma in 2014. Just eight short months later, Julie’s dad passed away. Julie also cruelly lost her uncle to the same disease just six weeks earlier.

Like so many people whose lives are affected by this disease, Julie and her family had never heard of mesothelioma before her dad was diagnosed. This lack of awareness has prompted Julie to call on the Scottish government to review its cancer strategy (which has no mention of the disease) to inform more people about it with the hope that it can be diagnosed much earlier.

Gordon had worked as a joiner during the 1970s and 80s when asbestos was a commonplace building material. We now know that exposure to asbestos is linked to mesothelioma and we expect the number of cases to rise as the disease makes itself apparent in men and women who worked with asbestos earlier in their lives.

Julie said: “As a family we’d never heard of it before – nobody seems to have. But thousands are diagnosed every year and that number will rise dramatically. The problem is that there are no symptoms before it’s too late to do much about it. If people were more aware of the disease – especially those who worked with asbestos – then they could look for symptoms much earlier.”

Helping Julie raise awareness of symptoms, among men in particular, is Hibernian Football Club. Her dad was a lifelong fan of the team and he would take Julie to a match every week.

The football club has been a huge support to Julie and made a film telling Julie’s story which it shared through its GameChanger campaign – a partnership between the club and NHS Lothian which aims to deliver better health to the club’s supporters.

Following the success of Julie’s film on the GameChanger campaign, she was contacted by the Leader of the Scottish Labour Party, Kezia Dugdale, who offered her support.

With the support of the party leader, Julie has challenged the Scottish Health Minister on the following points:

Does the Scottish Government currently carry out any type of specific Mesothelioma early deduction work within the ‘Get Checked’ or any other of their public awareness campaigns?

Are there any plans to specifically target demographics that are more susceptible to being diagnosed with Mesothelioma?

Does the Scottish Government have any plans to remove all asbestos from public buildings?

Julie said: “I do think the government could start raising awareness – letting people over 50 perhaps know that if they worked in certain trades they could be at risk and to keep an eye on their health.”

Kezia Dugdale, commented: “I have written to the Health Secretary Shona Robison to find out what exactly the Scottish Government is currently doing on this issue.

“We know from research that the poorest people in Scotland are 68 per cent more likely to die from cancer than our country’s richest. We cannot live in a country where there is a direct correlation between the likelihood of someone getting, and then surviving, cancer and how much money they have.

“The Scottish government must do more and be willing to try new things to make these changes happen. I’m willing to work alongside the Health Secretary and cancer charities so we can make sure we fight diseases like mesothelioma and ensure that cancer does not become a deprivation disease in Scotland.”

The worker health and safety charity, Scottish Hazards, was also made aware of Julie’s story through the GameChanger campaign and signed up as a result and will be able to help raise awareness of mesothelioma.

Julie is making fantastic progress with her campaign and has met with the Scottish Parliament and is attending the Cancer Cross Parliamentary Committee in September to tell her story.

Julie believes early diagnosis could make a huge difference. “Those months from diagnosis were precious to us all. My dad had some time to think about us all – wrote letters for us to open afterwards. But we do feel robbed of the times we now won’t have with him. I just wish he’d been diagnosed earlier.”

We Came home by train I love St Pancrus such an old building but so very Victorian. Inside is a modern station with our HIgh Speed trains. Home in an Hour is just wonderful.

Then The next day we were up and back to Victoria and Underground to Richmond to a meeting.

It is a wonderful setting and I just asked a couple were we heading the right way and they walked with us until we got there. We do find on these trip as to London the kindness of people all the time. I said to Ray so many times do I really look that old and frail that I need helping.

We had another great meeting and so many things to think about over the next few months. I can’t believe that disease has led me to such a wonderful interesting life where people want us to help out with Mesothelioma and Asbestos.

2017 is going to be more exciting than 2016 and that has been more than I ever dreamed could be.

I just go with the flow I keep saying my life is mapped out and each week proves that. I will keep going for as long as I can.

Once again it was a good journey home but at the wrong time. I have never seen Victoria so busy. A huge line upon line of men in suits and dragging cases on wheels behind them everyone looking at the phone in their hands. They just do not see you and so we have to walk around them. Really there is a comedy film to make here I do find it so very funny. On the train you can here every conversation and so you know all their business for that few minutes. Crazy.

Im waiting now for Lord Wills (I will be meeting him on the 1st November at the House of Lords) He is passionate about helping Mesothelioma and he is talking in the House of Lords at 5pm for an hour. I will report in tomorrows blog what he has to debate about.

Across our latest round of Cancer Action Groups the sale of Sam’s delicious cakes has raised over £150 for Macmillan and Breast Cancer Care. They have brightened up our meetings (and found the inner sales person within that some of us never knew we had!) I have received today these photos of the Breast Cancer fun we had at our meeting.

We then had to settle down and carried on with the meeting which I have already blogged on monday.

Also on Monday there was a great program on ITV explaining about Mary Seacole. A fascinating Lady as she didn’t have training as a nurse and went onto the battlefield with a satchel of herbal and medicines that she made.

She often rode out to the front line with ‘baskets of medicines of her own preparation’ to treat the sick and wounded of both sides on the battlefields. She acted as a surgeon as well as administering natural remedies. She became well-known to the soldiers, who called her ‘Mother Seacole’ and even ‘dear Mamma’

David Harewood (star of Homeland and The Night Manager) embarks on a very personal, three-year journey across Britain, Jamaica and Crimea following the creation of a major new statue of a woman who has always been a heroine of his, Mary Seacole – first statue of a historical figure who was a woman of colour to be erected in Britain

I sneaked this photo off Trevor Stirling face book where he said Huge thanks 🙏🏾 to David Harewood for presenting the Mary Seacole ITV documentary “In the shadow of Mary”

I loved watching how it took months to make the mold as a wire frame is used and clay covers it all and that took ages. I’m sur I would have given up.

But I love the Statue and all she represents. If you remember ray and I had our own personal tour of the site at St Thomas’s Hospital.

As everyone awake today they saw my blog about the Flasks that were made in China and the terrible fact that some contain Asbestos. It does shock as what else will they find it in. I have contacted the Customs and Excise to ask them what their policy is on making sure this wont happen again, but as Rod Smith of Bernie Banton says in Australia,

THe problem is Mavis, like in Australia, the only way to find it is to do destructive testing. We have containers of building materials identical in every visual way, but some has asbestos in it, others don’t. And I am talking about in the same packs and same containers.

They are supposed to have targeted random testing. In other words they have a list of items that have the potential to contain asbestos that they are supposed to test. But they have millions of shipping containers coming in from China.

I honestly think the only way is to ban Chinese imports of any product that may contain asbestos!

Well yes so do I lets say No Imports from China until they can prove the are Asbestos free and they have stopped mining.

You just know this will never happen don’t you !!! so we have to be more vigilant. Will be ever see a world free of Asbestos ??? The answer sadly is NO!!!

Please share around as here in the UK we have an import from China. Just how much is getting through in imported items is a worry after in has been found in CRayons and cement in Australia. We have to keep vigalant.

Risk: Chemical, ASBESTOS

The flask contains asbestos fibres. If the thermos breaks, the user may inhale asbestos fibres, which are carcinogenic. The product does not comply with the REACH Regulation.

Measures taken by economic operators: Recall of the product from end users (By: Importer)

Description: 1.3 litre stainless steel vacuum flask. No packaging

Country of origin: China

Alert submitted by: United Kingdom

Risk Type: Serious

If you find that you are in possession of a recalled product, the notification should give you details of what to do next. If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help. If you bought your product from a company based inside the EU, European law will protect you. Contact the UK European Consumer Centre for more details. If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

Risk Type: Serious
If you find that you are in possession of a recalled product, the notification should give you details of what to do next. If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help. If you bought your product from a company based inside the EU, European law will protect you. Contact the UK European Consumer Centre for more details. If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

Description: Plastic vacuum jug flask with a handle and push button pourage, 1-litre capacity. Comes in various
colours, no packaging.

Type/number of model: O-58836

Batch number/Barcode: Bar code: 5050577588369

Risk: Chemical, ASBESTOS

The separators of the double glass wall of the flask contain asbestos fibres. If the flask breaks, the user may inhale asbestos fibres, which are carcinogenic. The product does not comply with the REACH Regulation.

Measures ordered by public authorities: Temporary ban on the supply, offer to supply and display of the product

Our advice to consumers

If you find that you are in possession of a recalled product, the notification should give you details of what to do next. If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help. If you bought your product from a company based inside the EU, European law will protect you. Contact the UK European Consumer Centre for more details. If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

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Disclaimer
This all comments on this blog are of my own opinion Im not responsible as an “expert” and for what people do with my advice and wisdom. Anyone reading my blog will not hold you libel for what you say or display.The content on the blog is the opinion

DISCLAIMER

All comments on this blog are of my own opinion Im not responsible as an “expert” and for what people do with my advice and wisdom. Anyone reading my blog will not hold you libel for what you say or display.The content on the blog is the opinion of the blogger, not intended to “malign any religion, ethnic group, club, organization, company, or individual,